Chemar

Thanks for clarifying...as we have so many different disorders represented on these forums, it's helpful to know that. Have you heard of Dr Tanya Murphy in the St Pete/Tampa area.... Address: 800 6th St S, St Petersburg, FL 33701 Phone:(727) 767-8230 She is one of the original PANDAS researchers. A pediatric psychiatrist. Other members may be able to suggest more, but she comes to mind as you are located not far from her. She is a very caring person. (personal experience when my son saw her, even though he is TS not PANDAS) I would suggest you also post on our PANDAS/PANS forum and look through the helpful threads pinned to the top of that forum http://www.latitudes.org/forums/index.php?showforum=17 Hoping things get better.

Hi Melanie and welcome, though sorry to hear what brings you here. What was your child diagnosed with? ps I removed your last name to protect your privacy.

kc35 you may want to look at the other thread that I linked in post #7 on this thread...it is another CBIT discussion where we also refer to Dr Dunc http://www.latitudes.org/forums/index.php?showtopic=21298

bumping up for others to see

When my son had eye tics as the early manifestation of his Tourette Syndrome, he seemed totally unaware that he was blinking and rolling his eyes...so where I agree, sometimes there can be an irritant factor triggering the tic, yet for some people (especially those with genetic TS) the tics are frequently involuntary and not anticipated at all...they just sometimes "happen" from what my son and others with TS have described.

Yes, that has been a uniform theme here...that the child does no necessarily show allergy to dairy...yet eliminating it seems to resolve some tics, especially eye tics. The reaction seems to manifest pretty quickly after elimination or re-introduction Sometimes these kids will tolerate goatsmilk better. Some can handle the soy or almond milk but each of those (soy, nuts) come with potential sensitivity as well so it is trial and error. Sometimes rice milk is ok but I have heard from many who use goatsmilk without problems ...available at Wholefoods and I think Trader Joes etc

Potential side effects of Strattera http://www.rxlist.com/strattera-side-effects-drug-center.htm Again I do need to add a word of caution...different people respond differently to the same medication...what may work well and have little to no side effects for some, can have severe side effects and not much benefit for others.

Hi tenyearswithpans I do just need to mention that weaning off SSRIs can actually be a very difficult thing for many people and it usually needs to be done under doctor supervision and with a very gradual titration. For some people it can take a long time to fully recover from withdrawal symptoms, and if the weaning is done too quickly, it can have serious consequences. Not everyone reacts the same way to being on a medication, and similarly, not everyone reacts the same way to coming off it.

Hi have you tried to go dairy free? So many people have reported eye tics resolve when dairy is eliminated that it is worth a try if you have not already tested this Hormonal changes at puberty, especially in boys, can contribute to increased tics.

I'm glad it went well with no tic complications Mar

Please get a 2nd opinion before using that inhaler!!!!!! Before we knew that my son had TS, he had wheezing which we now know was actually a tic! A doctor said he sounded like he had asthma gave him an inhaler which made things way worse!!! I am not saying your child does not have asthma...just to have an actual respiratory doc confirm this before risking that inhaler... I am sure the PANDAS parents will have plenty to say on the doctor refusing to run blood tests and proclaiming no PANDAS on just his opinion! so will leave that alone.

Phew that sounds kinda pricey to me valsmom, especially when there are other very pure and complete formulas around, However, I do understand that is specifically formulated and is helping your child so that is good Jetocurly, to answer your question, we used supplements separately, except for those that I mention as combinations ie the multi etc My son had no problem swallowing supps and as I mention, we had them split in morning and evening groups. You will see also that I mention for kids who struggle with swallowing pills, sometimes taking them while swallowing water or liquid of choice through a straw helps. We have gone through various brands over the years but are most impressed at present with Thorne research multivitamin/mineral and their B complex. It is the only B complex my son has ever been able to tolerate. They usually only sell via physicians but iHerb.com is now stocking them at much less cost. (free shipping over $20 orders) In addition to the large selection of good, pure supps at iHerb.com, I would highly recommend pureformulas.com as they carry excellent brands at very good prices and have free shipping on everything. We get our Douglas labs supps there and some of the others. My son also likes some of the NOW supps and some Jarrow for the extra things he takes. There is also the BonTech range of supplements ...but they are specifically formulated for TS so unless you know your child has TS, not really recommended. There are also some people with TS that seem sensitive to their ingredients. Douglas Labs were making them for BonTech but not sure if that is still the case.

Hi I have documented my son's supplements in the link in my signature below. The things that help really are dependent on what is causing the tics, and also what the individual needs are. Not everyone responds the same way.

I am not sure if this has already been posted here? If so...here it is again http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx

Hi tics don't have to be a specific speed or frequency...they vary greatly. I do suggest you read through our Helpful Threads pinned to the top of this board (also linked in my signature below) and maybe consider getting Sheila's book as a reference to guide you.

bumping this up Welcome to the forum kakrpa

Yes, my son was helped by acupuncture. If you do a search on the forum, you will find a number of others have also found it helpful Be sure to choose a clinical acupuncture therapist who has experience with tics You really need to discuss doses with your healthcare provider. Generally a child aged 12 and of adult weight takes adult dose. But as your child is on medication, the doctor would need to advise you on this as the combination of supps and meds can change things

Hi I have merged your 2 threads as it gets confusing for others when 2 threads by a member are related to the same issue/asking the same questions If you read through our helpful threads pinned to the top of this board and also linked in my signature, you will find a lot of good info For people with Tourette Syndrome, magnesium seems to be the single most important supplement. There are many forms other than mag oxide so you should be able to find another type easily. If the tics are caused by something other than TS, magnesium may or may not be helpful...depends on the root cause. B6 helps facilitate the functioning of other supps and most find it best used in the P-5-P form I do agree that you should follow up further regarding the strep or some other infection connection...our PANS forum has a lot of information regarding the other questions...if you use our search box entering specific keywords you can usually get a lot of info from past threads.

Hi Eye rolling is a very common tic in both TS and other tic disorders. However, the fact that your child describes the feeling that something is in the eyes and therefore the need to roll them sounds like something may be irritating them? If it correlates to when he is on the inhaler then it really does sound like there may be some ingredient there acting as a trigger? I know that with asthma you need to have some form of airway treatment, but perhaps the doctor can find something that has different ingredients? The fact that your child is PANS plus asthmatic just adds more variables than being able to define this as "just an eye tic" imho

911RN's children do not have TS though Mar (as far as I know) She posts on the PANDAS/PANS forum I am addressing the issue from the perspective of TS

TS tics are very very varied so there is no "typical" tics for everyone, even within a family. Here are some commonly recognized tics http://www.tourettesyndrome.net/wp-content/uploads/CommonTics.pdf

You can also get high grade Curcumin OTC As it is the primary anti-inflammatory agent in Turmeric, we were advised to use it as a supp and then also cook with Turmeric Depending on the brand, you can get it at far less than $60 per month supply. Some people like the one mixed with bioperine as that is supposed to facilitate absorption, but we don't use that as my son is sensitive to black pepper

TS does run in families, so where I agree it is always wise to investigate for a possible infection connection, still this may be the manifestation of genetic TS. The repetition, aka echolalia, is a common TS vocal tic. Emotional outbursts are also not unusual with TS, especially in younger kids. remember TS can manifest as no more than simple tics all the way though to very complex tics and other co-morbid conditions. One of the earliest things I remember my son saying about his tics as well as his Tourettic OCD was "my head made me do it"

Mar my son has had glasses now since pre-K and we discovered very soon that the dilation drops were a tic trigger for him...big time! So now he has no drops when he has the exams, and his eye doctor understands why. It is mainly in cases of suspected eye diseases, when they need to be able to look at the retina, that the dilation is essential. For a routine eye exam, they do not need it. I know everyone is different, but my son is now an adult, and a few years ago, decided to allow the drops for his annual eye exam and boom! tic flare....

No Mar, at least we were not told to take extra calcium, provided one is getting the RDA of it in the diet/multi etc